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Online amyotropic lateral sclerosis (ALS) resource launched

09 March 2010

Trophos, announcing the launch of MitoTarget Online on behalf of the MitoTarget consortium, hopes the site will support patients and carers and speed up finding a cure for ALS, which has attacked many people – including scientist Stephen Hawking.

The multilingual web-based resource aims to be the first point of call for all those affected by ALS. This includes sufferers and physicians, care nurses and specialists, as well as members of the public with a friend or family member with the disease.

The website contains detailed information on ALS and related subjects and will host a comprehensive range of links enabling all those affected to find further information and support.

ALS, or Lou Gehrig's Disease, is a fatal motor neuron disease that currently has no cure. The life expectancy of ALS patients usually ranges from three to five years after diagnosis. The disease causes degeneration throughout the brain and spinal cord.

Famous sufferers include Stephen Hawking, who is thought to have an extremely rare variant of ALS that has enabled him to survive since his diagnosis at the age of 23. Ninety thousand people are estimated to have the disease worldwide, and more people die annually of ALS than of multiple sclerosis. It most commonly affects people aged between 40 and 70.

MitoTarget Online will also enable the ALS community to follow details of the major clinical trial being run by the MitoTarget Consortium. Currently, there are few drug trials in ALS.

The MitoTarget consortium is backed by the European Union and consists of 17 partners from four European countries (France, Germany, the United Kingdom and Belgium). A centre in Spain is also participating in the project. Fourteen of the partners are participating in the clinical trial and five in research aiming to understand the underlying mechanisms of ALS and other neurodegenerative diseases.

Stephen Hawking, CH, CBE, FRS, FRSA, the British theoretical physicist, and a patron of the Motor Neurone Disease Association, said: ‘It is essential that as much support as possible is given to those who are diagnosed with ALS. Their needs are to live as long as possible in as fulfilling a way as possible. It is encouraging that the MitoTarget consortium is providing practical online support for all those affected as well as developing treatments for ALS with EU backing.’

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